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Crohn's Disease Forum » Your Story » Happy to be here


06-25-2014, 10:07 AM   #1
Anny
 
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Happy to be here

Ane to share with you how well I'm doing.

Have had Crohn's since I'm a child, onset around 9-10 years old. Terminal ileum. Resection, 30cm. Flare around 16, resection around 10 cm, same spot. Sufferd from Short Bowel Syndrome after that, used Questran successfully to mitigate the bid D. New flare at 25, this one was life changing in a baaaaad way. Was off work for 5 whole years, Was put on Pentasa (constant upset stomach), Flagyl, Mercatopurine and on predinisone... put on 100 pounds from the steriods and had a pretty bad depression.

Finally went into remission around 29, lost my excess weight and got back into the work force and into life itself as well. Now am 45, and am lucky enough to have a GI specialist who is proactive. I had the first signs of a flare back in Februrary 2014 as I had my arthitic pain come back... then I had a big episode of bowel pain in May, and my old old fistula came back.... Immediately went to see my GI and he put me on Cipro and Flagyl to heal the infection. He suggested Humira and I was absolutely flabbergasted, appaled to realise I was facing a new flare... After the infetion went away in my fistula, I realized I needed to take an active stance as well, as my arthritis was really acting up and this is a sure sign of a flare for me. Got all the TB testing done in record time and started Humira last Friday, June 20.
I got up June 21 a brand new woman..... that stuff seems like magic....!

Anyways, I'm just here to tell you that during my reflexion period, early June this year, your forum has been a huge source of support, reading all your stories and realizing that maybe, just maybe, this time, my life won't lapse into the abyss once again. And it didn't. And it won't. Humira seems to be the game changer this time.... and for me, a life changer, a life saver.

Cheers!
Anne
06-25-2014, 10:13 AM   #2
DJW
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Hi Anne and welcome. So glad humira is working for you.
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Crohn's Disease
DX 1978 (12 yrs old)
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Visit Crohn's and Colitis Canada:
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Dave
06-25-2014, 12:40 PM   #3
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Hi Anne, welcome to the community!

I'm glad to hear you're doing so well. That's wonderful! I'm also glad to hear you've got a GI who you feel so comfortable with.

I hope to see you around the community
06-30-2014, 12:46 PM   #4
Jajabinks
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Welcome Anny, hope you are well. What joints does Crohns affect you in? You had pretty good success with 6MP! Kind of wish my doctor would have placed me on something like that when I was diagnosed instead of Pentasa.
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06-30-2014, 09:31 PM   #5
Anny
 
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Hi Jajabinks,
My arthritic pain was bad, and getting worst all the time.... A friend at work told me last week how good it was to see me move painlessly... She had noticed a quick deterioration in the last little while; it was evident from week to week how quickly it was progressing.

I had pain in all of my legs, all my joints and my bones as well hurt, bone deep. I had swollen ankles by lunch that would become cankles by dinner time. Walking around was painful, and my knees were not good. I would limp a lot. I used my upper body too much to help me manage stairs and that also impacted my amrs, shoulders and neck. My hands also were not spared, hurting more so in the hands than the fingers however.

My back, especially lower back, was sore; my hips as well. No twisting or swaying hips when I walked, I was stiff as a board. Come to think of it, it was bad all over, but the spots I've just listed were simply the most painful. The Humira was almost like a magic wand that took this all away in a matter of hours.

I was on Mercatopurine from 1995 on; at first when I was put on the original regimen I had that, Pentasa (hated it!! so hard on my stomach, heartburn 24/7 for 4 years) and Prednisone (hated that too....!!! put on 100 pds, had moon face, and the constant sweating!! I felt gross!).
I stopped the Prednisone first then once remission was confirmed in 1999, I stayed on the Mercatorpurine until a couple of years ago, as the availability problems made my GI doctor and I change into Imuran. I had no side effects from either of those, and I'm still on Imuran today. My GI offered me to go back to Mercatopurine last year when the medication was widely available again, but since there was basically no difference for me on either one, I sayted on Imuran.
I still have some bits of pain here and there, especially in my hands and one knee. I'm seeing a specialized massage therapist to help with the muscular pains left over from my overuse of my upper body.
07-01-2014, 10:44 AM   #6
Jajabinks
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Wow! Did these arthritic pains just begin for you or have you had them since your 20s? I was under the impression that 6mp did not work for arthritis. I am having many of the same pains you had and it has severely affected my quality of life. I applaud you for being able to still go to work in that state! I cannot even sit in class for a lecture because my back hurts so badly and my hips. I end up bedridden every time I have to sit for long periods of time (and it happens even when I use the tailbone pillow for back problems).

My problem areas: hips, back, hands, shoulders, fingers, wrists, neck....way too young for this.
07-01-2014, 11:08 AM   #7
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Hi Anny

Welcome to the Forum.Glad you decided to join.I hope the Humira continues to work for you.I'm sure we'll bump into each other here.
07-02-2014, 02:50 PM   #8
Anny
 
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The arthitic pains have been with me since I was about 25. I was given anti-inflammatories for that, but it wasn't something I wanted to use all my life if I could avoid it. Bad enough already that Tylenol and Aspirin have no effect on me, NSAIDs are the only thing that take away pain for me, like Advil or Naproxen.

So after the debilitating pains went down as my Cronh's got slowly better, I went off the anti-inflammatories for the arthitis completely.

Instead, I started using apple cider vinager, as I'd heard one of my cousins had good success with it for managing mild arthritic pain.
I tried drinking it, Braggs makes a good organic one. That didnt't last...! its a bit strong to say the least! lol! I found it in capsules, from Webber Naturals. I still take it today (3 x 500mg capsules once a day)

It was working well for me ever since I got into remission back in 1999, and I was pretty much pain free most the time. Only minor pains in feet and hands when it was very cold in winter... like -25 or -40 Celcius.... lol ! I'm too much of a Canadian to feel the deep freeze isn't normal in winter lol!

Looking back I now can tell my first symptoms of flare were the arthritic pains in late Feburary - March this year. I should have made the association, but it took my fistula re-opening to get me going to my GI for him to take a look and get antibiotics. Even when he told me he wanted me to go onto Humira I still didn't want to think I was having a flare... I had to think it over and I called him after a couple of weeks and he had to tell me a second time he suspected my arthritis pains, constant diarreha and now the fistula was all pointing to a brand new flare.... lol! I didn't want to see it or beleive it.

The Humira has taken this pain away, almost magically. Now that I'm due for my second set of 2 shots, I feel the pains again. I can't wait for Friday this week!
07-02-2014, 09:05 PM   #9
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Welcome to the forum, glad it has helped!
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07-03-2014, 10:49 AM   #10
dave13
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We really do have to listen to our bodies and keep an eye on things,so to speak.Good luck on Friday.
07-09-2014, 09:33 AM   #11
Anny
 
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Thanks Dave,
Friday's shots were the 2nd loading doses, so one per thigh.

I'm not sure why but this time both burned a lot going in. Maybe the Humira wasn't out of the fridge long enough or the alcool wasn't dry on my skin, I'm not sure. But it sure hurt! Small price to pay, but I'll be more careful from now on. Thankfully it's only 1 shot every other week from now on; I can definitely handle the 2 mins of pain in light of the payoff.....

The digestive track side of things have improved 75-80% so that's wonderful. But it seems I'm already not responding super well on the arthritic pains side of it.
And of course to make matters just so, I twisted my bad knee only like... several times yesterday...! argh!

I'm using my cane to help with this, and I'll get a knee brace today. Don't want to do some kind of real or permanent damage to that joint.

So... Yippie!! my Crohn's is responding to the treatment! and Boooo!! my joints aren't as good as they were the first week of treatment. Hopefuly this will resolve itself over the course of regular treatement.
07-09-2014, 06:34 PM   #12
dave13
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This is good news! We have to take our victories where we can get them.We fight and struggle so much.Lets enjoy a good day.

I hope your knee feels better,please use a cane if you need to.You may not want to,but we do what we need to do to get healthier.

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